One Sick Mother

A "Dislocatey" Week So Far

I dunno why sometimes I seem to stay together so well and other fimes I fall apart very easily.  I am speaking literally here. My bones can stay where they should for months on end and then for some reason, they all suddenly decide to go a-wandering.

I have been very "clicky" recently. Much moreso than usual. Then I woke on Sunday with a slipped disk in my neck. This transmogrified into a collarbone thing.  I spent most of Monday trying to rearrange my collarbone (don't try at home). The last time I remember doing this was during Sr. Canice's class in 4th grade. I used to sit and clunk my collarbone because I got into trouble for all of my other figets.

Sr. Canice was very strict. She died of a brain hemmorhage just a few months into 4th grade, which traumatized us all greatly. She was young to have died so sudden, and although she had been strict, she was a great teacher and we had all loved her.

So yesterday, I was taking a bunch of kids to the pool, and I dislocated two separate bones in my hand on two different occasions just opening and closing doors.  So there I am jumping around the parking lot, clutching my hand, trying NOT to curse like a sailor, and the kids gathered around me.
"what happened?"
"I think she burned herself"
"Are you OK, Mrs A?"
"She burned herself?"
"How can she burn herself? it's not that hot"
"Mom? did you burn yourself?"
"What happened?"
"Mom? Can we go now?" 

That last one was Joe, of course...

You have to see the funny side.

Funny, when I tried to explain to the kids what had happened, Joe was the one who got it immediately. "Oh. That hurts."  So it has happened to him too and he never told me. Or his rheumatologist. <sigh>  What am I going to do with that kid?  We try to get information out of him in a non-suggestive manner, and nothing comes out at all. But he sees the similar situation and he immediately relates. It is frustrating to parent him sometimes, because so much comes out so long after the fact; -much too late to do anything about it.

Many people think that the dislocations that happen with Ehlers-Danlos Syndrome do not hurt.  Let me clarify this for people who have not experienced it:  A lot depends on *how* you dislocate. If it is straight out and back in, it usually doesn't hurt.  So I can sit here and pull my hand straight off my wrist and it will not hurt so long as I put it back right without grinding the bones together. However if I do something else that might dislocate my wrist, like pull open a heavy door or place  big tub of cat litter into the cart at the supermarket, there is usually some lateral forces or twisting involved, and yours truly ends up a cursing pile of mush in the supermarket or outside the door.

Even if is is just a patial dislocation (called a subluxation) and the bone pops right back in again, it can still hurt for hours afterwards. There is usually  some swelling and inflammation for some time afterwards, too. I still remember my Da being bewildered and frustrated by this when I was a child. He believed that I had hurt myself (the only adult who ever believed me), but couldn't explain or help it.

I have been trying to work out why I am suddenly so clicky and dislocatey (I like that word).  I am thinking it is probably a vitamin shortage. I have not been eating at all during the day, so my vitamin intake has become kind of spotty. So I guess i will have to start eating again, which will mean I will start seizing more. Ugh!

Choices like this suck.

And I have still not heard back from Dr. Thyroid, BTW. I am going to call this afternoon.

Am I The Only One Who Sees It?

That Michael Phelps knows he has a Connective Tissue Disorder (CTD) such as Marfan Syndrome and is not publicly admitting to it, that is.  Am I the only person in the universe who has read that passage in his book and interprets it -not as a statement that he doesn't have a CTD, but as a carefully worded failure to admit that he has one?

I really must be the only one. And I wondered about this for a bit. Were my instincts completely off?  Has OSM finally lost her edge?  I didn't think so. And then I thought about it some more and I realized that I am probably unusually qualified to spot this for two big reasons:

1. I have a connective tissue disorder and I know what is involved in the evaluation for and diagnosis of such. In other words: I know what was omitted from the descriptions in the book.
2. Having worked in customer service for years, I am quite an accomplished wordsmith and spinmaster myself. I recognize great spin when I see it, and I have to hand it to Brian Cazeneuve: He is a genius.

OK first the omissions: Say you are a young athlete who is referred to a major medical center by your coach to rule out Marfan Syndrome because not only do you have certain physical characteristics, you have a rapid heartbeat (that's tachycardia in medical parlance) to boot.  What will happen to you?

Well, you will have a lot of tests and examinations, probably by one or more teams of people.

First off, there will be extensive physical examinations. You will be weighed and measured. And when I say "measured", I am not joking.  The team should take a lot of measurements and check them relative to each other. The most publicized one is the height/armspan ratio, which OSM has mentioned here before and then seen her own words cut-and-pasted all over the web (Hello people: Copyright!!!!). But there are other measurements, ratios and tests: There is the upper to lower body ratio, There would probably be measurements of chest and head circumference (depending on your age at the time), as well as possibly of the long bones; femurs, fingers etc.

They would look for certain established signs of Marfan Syndrome, which are called (in a rare case of simplicity in medical terminology) "Marfan signs": Can you reach your elbows back behind you and touch them against each other?  If you wrap your hand around your wrist, does the pinkie overlap the thumb (both hands)? If you make a fist with the thumb inside the fingers, does the tip of the thumb stick out the pinkie side of your hand (and by how much)?

Scoliosis would be checked for as well.

There would also be an assessment of hypermobility, probably based on the Beighton Scale, and you would be scored based on that. A score of 5 or more (out of a possible 9) means clinically hypermobile.

There might be more: examination of mouth, teeth, jaw, and you would be asked to perform any "tricks" of hypermobility that most of us "X-men" have learned as kids and used to gross out other people.

So after all that is done, there is the other presenting factor to address: the tachycardia. (this may actually been tackled first). Any person who has a suspected connective tissue disorder -particularly Marfan Syndrome- will have an echo-cardiogram. This is essentially a sonogram of the heart, where a technician will use a machine to visualize and take pictures of the structures of the heart: the valves, chambers and surrounding large vessels to make sure there are no physical defects therein or thereabouts.

There would probably be other heart tests too: an EKG (the one test Phelps actually mentioned), probably a stress test, which is an EKG while on a treadmill (which he no doubt aced) and possibly a holter monitor test (i.e. 24 hour EKG) and a tilt-table test to rule out POTS, which is a common complication of connective tissue disorders.

You will also have a very thorough examination of your eyes, which he completely fails to mention; -Marfan syndrome effects the eyes in a lot of cases- and the lungs, too.

If anyone is curious, there is a complete Marfan diagnostic checklist here.  Interestingly, the 1.04 armspan/height ratio that Phelps has, although it is below the technical cutoff of 1.05, will not exclude him from a diagnosis if other criteria are met.

So Michael Phelps would have gone through all of this testing.  Now, I am not going to reproduce the relevant paragraphs from his books here and break them down piece by piece, because for all my whining about my own copyright, I am not going to disrespect his. So you will have to go elsewhere to read his words.

But there are some things he said -and more interestingly didn't say,  which I find completely fascinating. Here are some examples (paraphrased)

• He says he just had an EKG test (Hello! see above). But then he mentioned that his aortic route is clear. Well, you can't see that on an EKG. You can only see it on an echo-cardiogram. So he has had more tests for this than he lets on.
• He says everything was and is "okay". He does NOT say "I do not have Marfan Syndrome or anything similar" which is what most people who don't have it would say.  He says the "tissues are strong" (very interesting wording there -means a lot to an EDS-er, that.) and everything is OK.  You gotta love Brian Cazeneuve, because this is really a masterpiece of evasion.
  
• He then goes on to mention that he is tested once per year. OK. That is telling: In my experience, if a condition is ruled out, it is ruled out. You don't go back for regular checkups. My daughter was checked for cardiac complications due to her Ehlers-Danlos Syndrome. Her echo cardiogram was absolutely fine, and so the doctor basically said. "You don't need to come back here ever again. Have a nice life. Bye!"  I doubt any specialist  would follow up regularly  with a patient just for laughs. Most will only follow up if there is good reason. Otherwise they discharge you, and maybe have you follow-up with your regular doctor if there is a small risk.

I also wondered what was the specialty of this "Dr Peter Roe" who is mentioned in Phelps' book?  I searched for him online and I couldn't find him in John's Hopkins or anywhere else. In fact, the only hits I got when Googling him and Marfan syndrome were in relation to Michael Phelps.  Hmmmm. That didn't make sense.  I wondered if his name had been misspelled (by accident, of course)? I found a Dr Peter Rowe at John's Hopkins. Interestingly, one of his special interests is Ehlers-Danlos Syndrome (EDS). 

So maybe Phelps does not have Marfan's after all. Maybe Michael Phelps has Ehlers-Danlos syndrome?  That would explain a lot. It would explain why is heart is OK. EDS does not always impact the heart the way Marfan Syndrome does. Also many people with EDS have physical Marfan signs and characteristics, such as the long arms and fingers -myself included.

So I guess I was wrong when I said Michael Phelps has Marfan Syndrome. I figure he has Ehlers-Danlos Syndrome.  And he has found a creative way to not tell the world about it.

So really, my writing this is a pretty bitchy thing to do. I am sorry, Michael. I really am. My need to be right is more important to me than your need to stay in the closet with this.  And I really do think it will benefit a lot of people if this was made public. My children both have EDS and they need a role model who would enable them to face their future with pride and hope, not fear. -Because hello! The only other EDS-er they know is me, and OSM is hardly the picture of health and vitality...

Michael Phelps; I wish you could overcome your fear (of what?), stand up and be that role model. It would mean so much to so many people. You have no idea...

This piece and all One Sick Mother text is Copyright (c) Paula Rice, 2007, 2008. All rights reserved. Entries may be linked, but not reproduced in any form without prior written permission.

Jumping Through Hoops

I am STILL trying to find doctor #27. I wrote back in April about this search here. Since then I have changed tack, and decided to put the mitochondrial person on hold for now, and seek out another endocrinologist. A thyroid specialist this time because I still think the experience I had while taking thyroid meds is very significant, but no doctor can explain it, or indeed even seems very interested.

A friend of mine have me the name of her endo, who is a thyroid guy.  He is both highly recommended by her and very highly regarded in his professional field. He seems ideal. So I called to make an appointment. Now, my healthcare plan does not require doctor referrals for specialists, so I am used to just calling specialists to make an appointment. The very nice receptionist at Dr Thyroid's office explained that the good doctor pre-screens his patients.  I need a note from my doctor, explaining why he thinks it is a thyroid problem, as well as recent bloodwork. The bloodwork is no problem. I've got bloodwork results for miles. So I explained my situation to her, and she said if I just write a brief explanation with the bloodwork, the doc would review and decide if he should take my case.

OK I do understand that he doesn't want to waste either of our time, but having to make a case in writing seemed a bit OTT to me. And at back of this lurks the confidentiality issue. What if I send him me medical records, and he refuses to take me case? So he is not my doctor, yet he is in possession of a lot of me records. Where does that leave me vis-a-vis confidentiality?  Not that I don't trust the man, and I know some specialists routinely practice this kind of screening (The Chiari Institute immediately comes to mind) But I do wonder about patient protection and confidentiality in these scenarios. HIPAA probably has provisions for this, but what about for people from abroad?  But I digress...

My brief explanation ran to three pages.

In fairness, I did keep the salient points on the first page, with a little table of explanation. Then on page two and three I gave some history and details on what has already been tried and what has been ruled out.

I ended up sending an 18 page fax. That was just for the endo stuff. I had been tempted to include some ER records but I left them out for now. I and bring them when (if) I see him.

So I am waiting for his office to get back to me to let me know if Dr Thyroid will see me or not.

You know it was lucky for me I had a good day yesterday. I was able to sit down and write a coherent three-page document. Last week, I needed to write a three line letter about my car, and it took me
three days to psych myself up to it, and then about 5 attempts to get it (almost) right.  Three lines!  I know motivation plays a (large) part, but I really think my braincells are dying at an accelerated rate. However, that is a whole 'nother post.

Treating With Food Part 576

I am not supposed to "treat myself with food". That means I am not supposed to address my symptoms by changing my diet or eating patterns; not that I should not reward myself with food. But these days most food is more of a punishment than a reward for me, so treating myself with food becomes -by default, a medical term. And I am not supposed to do it. However, as my symptoms seem to be directly related to food and metabolism and no medications have actually helped; what choice do I have?  In order to be marginally functional and not have fits 3-5 times per day, I must treat myself with (or without) food.

I figured out a long time ago that I feel OK in the morning until I eat breakfast. After eating breakfast, I usually feel horrible. So I might skip breakfast. There is a downside to this plan, however: The longer I postpone breakfast, the more horrible I feel when I do eventually eat. (and yes: I have tried every different kind of breakfast you could imagine)

But sometimes postponing breakfast is the only way to get things done. Say if I need to drive anywhere, I will do it before breakfast. Then I will eat after I get home. I know the consequence for this will probably be a worse reaction than if I had eaten on time, but at least I got whatever-it-was done and crossed off the list.

So if breakfast (most meals) is bad the next logical thing is not to eat at all, right?  That doesn't work for me either. if I fast too long, I will suddenly get all the usual symptoms of an aura and will have a fit. I used to think it was due to low blood sugar, but I have tested my blood sugar levels prior to one of these fasting fits and it has been in the 90s, which is normal-high for me. Indeed, many times I have tested my sugar in the morning, found it low, fasted, felt an aura, tested again, and my sugar is higher.

Hmmm... I guess in these scenarios, my body released stored sugar, which somehow triggered the fit. Many, if not all of my fits seem to be  related to blood sugar fluctuations. But simply eating a low glycemic diet does not seem to do the trick. There is something else -something related to protein, groupings, sequence of meals or quantity... Or something. I don't know what. I do know that some well tolerated foods can give me problems for no apparent reason. It appears to be related to what meal /when I ate before the trigger meal, if that makes sense. It makes it much harder to spot any pattens.

One pattern is time of day. Often, I feel better generally and have a less poor reaction to food in the evening and night.

So my latest plan -while not really a plan and probably not sustainable; -is to not eat at all, but to keep blood sugar up and avoid the big glucogen release. Right now sweetened coffee is working, although that is not the healthiest thing, I don't want to mess with a formula which is kinda-sorta working for now, as the kids are home fulltime for the next few weeks. It is not an ideal solution. I dont' eat at all before 5pm and get very grumpy, but I don't know what else to do.

And it is not a cure either, Taking all my vitamins is difficult because I have to take most of them with food. And today I had a big fit after my 6pm meal. It goes to show that a "treatment" -no matter how bizarre- is not a treatment at all when the underlying condition is unknown.

Diagnosed With ADHD As An Adult

I have been asked about this a bit recently. And then someone reminded me that Michael Phelps has ADHD and is actually open about that one (or his mother is, anyway), so I thought maybe it is time to relate my experience in case anyone is going through a similar thing.

Many people think ADHD is a disorder of childhood and that it somehow magically disappears when one reaches adulthood.  Well it doesn't. A leopard can't change its spots and a person with ADHD will have it from birth until death.

What they do develop are coping skills and masking skills.  But sometimes those are not enough.

I figured out years ago that I have ADHD. I figured it out in the way many parents do. There was something "going on" with my son, the preschool psychologist suggested I have him tested for ADHD and I researched it extensively.  I remember reading the descriptions and thinking This does not describe Joe one bit. But it totally describes me! And it did!

People talk about lightbulb moments, and I do remember sitting right here at this desk thinking maybe I wasn't just a horrible, irresponsible student. Maybe there was a reason I couldn't listen and couldn't do homework (because I really, really TRIED but no-one believed me when I said I tried)

But then I got to thinking about getting the diagnosis formalized and I thought why bother?  I had a family, a good career (then), and about anything I ever really wanted (except an XJS), so I didn't.

But then it started getting worse. 

OK, I know now that ADHD cannot "get worse" But I didn't know that then. I also know that stress and other factors can make one's ADHD appear worse. But I didn't know that then either. I just knew that it was 10 steps from the dining table to the fridge and in those ten steps I could not remember what my kids told me they wanted from the kitchen. Joe learned to listen for my steps to falter when I forgot why had gone in there and then he would call "Milk,  Mom" or "Mom!  ketchup!" or whatever it was I had forgotten by step number five.

When your Autistic seven-year-old learns to remind you of stuff, you know something needs to be done.

So I went to a neurologist and said "I think I have ADHD. How do I go about getting evaluated?".  I was referred to a psychologist , who asked a great question: "what does ADHD feel like?" Then he went on to evaluate me with interviews, forms, history and some other stuff. Yes I had it. Moderate-severe ADHD, Inattentive subtype.

I went on Adderall for awhile and I started remembering the ketchup etc without a reminder from Joe. The first time I remembered it, we were both a bit stunned.

When the fits started I was taken off Adderall because it lowers the seizure threshold (although I am pretty sure Adderall was not a culprit in my case).

Now Joe has to remind me about the ketchup again.  And I have cognitive disorder- NOS as a diagnosis by way of explaining how my ADHD got "worse" (some solution, huh?).

And so one might think that I have come full circle and there was no point at all in my being diagnosed with  ADHD at the ripe old age of thirty-(mumble).  Well, there was. Knowing I have ADHD enabled me to do a lot of things. I learned a lot more about myself; how my brain works and how to maximize my strengths and minimize my weaknesses. Knowing I have it allowed me to forgive myself for not being able to do certain things. To stop berating myself for my distractability and some of the other ADHD "gifts". To stop trying to do some things I would just never be good at and instead to concentrate on the stuff I do well.

So in a weird way, learning I had ADHD helped me to focus.

Mad, eh?

Missed Opportunities

(*There is an update to this topic here )

Michael Phelps has Marfan Syndrome.

You would never know it listening to the commentary. They mention it in pieces; that he is 6' 4", and his  "wingspan" (as they call armspan) is 6' 7". That is a ratio of 1.04. (just short of the clinical cutoff of 1.05). They also mention that he is hypermobile; -or as they say; "double-jointed" in knees, shoulders and ankles. Phelps himself mentions Marfan in passing in his book. He says he has "early symptoms" is followed up every year by a specialist and his heart and aorta are fine so far.

I have been seeing connective tissue disorders (CTDs) everywhere I look these days: I was watching the Olympic Games and those segments they did on the Chinese gymnasts and acobats. I bet most of them has a CTD. In fact, most of the olympic gymnasts look suspect to me. Watch how their elbows and knees bend past straight. Most of these athletes probably don't have a clue that their hypermobility could be indicative of a genetic disorder.   Until later, when the pain and the dislocations start to get them.  And even then, most of them will blame competitive gymnastics in their youth for their joint troubles later on. CTDs are still very  unknown and misunderstood.

And it's not only the Olympics:  I was watching the season finale of "So You Think You Can Dance" (love that show) and the "battle of the poppers" really set me thinking. I think many of the dancers of SYTYCD look like they might have a CTD, but a couple of extreme examples are available in those poppers. OMG! Those guys, Robert Muraine and particularly  Philip Chbeeb both can do some very unnatural things, including dislocate bits at will.  Watch this and you will see what I mean.  Can you say Ehlers-Danlos or similar?

The sad thing about most people who have a CTD is that they have no clue their flexibility could be a problem. I remember talking to my aunt a few years ago, back when I was first diagnosed and she summed the thinking up pretty nicely: "Oh sure. We were all double jointed -some more than others, but we never thought that was a bad thing. We never thought we had a syndrome. We just thought that if school didn't work out, we could run off and join the circus..."  a full 40% of them died of brain bleeds, but they never thought that was related to their hypermobility. To this day, they don't think these events are related. And maybe it is a coincidence (or four), but to me, that seems unlikely to be true in all cases. Sad, eh?

So you would think, with all the CTD afflicted people getting all this very high-profile coverage, there would be more about CTDs in the news, right?  No, there isn't. I suspect most of these people don't know they might have a CTD. 

Except for Michael Phelps. He knows he has Marfan Syndrome and he has chosen to downplay it. That must be a huge blow for fellow Marfan sufferers out there, who see what Lance Armstrong has done for cancer awareness and see this huge opportunity for awareness and fundraising missed.

Now, Just because a person is a public figure and has a condition, it does not mean they have to be a spokesperson for that condition. It is not Micheal Phleps' job to be the spokesperson for Marfan or for anything else unless he chooses to do so. And I can't say I blame him for his choice not to do so.  He has different priorities right now, -publicly stated as "eat, sleep, swim (...get laid and win lots of gold medals" were not publicly stated, but he is a 23 year-old male Olympic athlete, so I think we can assume they are a given). Not much room for Marfan awareness in his heavy schedule. Or maybe he doesn't want this success to be attributed to Marfan, as opposed to his talent, skill, hard work and dedication. Maybe he has plans to take this on later, after the 2008 Games or after he retires from competition? Who knows?  But I doubt he will ever have such a huge global stage available to him again, and I do feel sad that this opportunity for awareness is being bypassed.

*There is an update to this topic here 

Where Does The Vitamin C Go?

As I have mentioned before here, I have problems with Vitamin C. I have to take a lot of it to keep my blood serum levels in the low normal range  I try to take 4-6 grams per day,  which is roughly  6,600-10,000 times the recommended daily allowance. Just to retain low normal levels.

Kinda interesting, no?

Now Vitamin C is essential for collagen, and without it the body's connective tissue will break down, a disease known as scurvy (Yo-ho-ho!). I have Ehlers-Danlos Syndrome, which is a problem with collagen. Most doctors assume me low vitamin C levels are somehow related to the EDS.

But I hate assumptions.  Just because something makes sense theoretically or logically, does not mean it is true. And assumptions are dangerous to people like me. Assumptions block the search for actual answers. And answers are what I need here, folks.

Because I have been seriously supplementing my C for six months straight and I am no less stretchy than I ever was. I think the C is not being used to fortify me ligaments. So where is it going?  That's what I want to know.

Perhaps I am not absorbing it. This is a possibility. However the rheumatologist -who is very up on nutrition asked me when I told her how much I take (and after she had picked herself up off the floor) "Does it not hurt to pee?"
"What?"
That much Vitamin C should make your urine very acidic. Don't you feel that?"
"No. But that would only happen if I'm excreting it, right? If I am absorbing it, would it make my urine acidic?"
"No. I don't think so..."

So I don't think I am flushing it either, although that has not been tested.

So what am I doing with it?

So I did a little research: Vitamin C is used for a lot of stuff besides collagen. It does a lot at the  cellular level: It is an anti-oxidant, and so helps remove free radicals. Of course I never knew exactly what a free radical is (as opposed to an expensive radical or even a free conformist) or why it needs to be removed. Usually I like free stuff. Of course, if I am paying some kind of biological  rent on the radicals, then they have to go.  Free radicals may be one thing, but freeloading radicals are quite another. (although most radicals I know would never dream of paying rent).

C also helps defend against reactive oxygen species -whatever they are,- apparently. Who knew so much social unrest existed in our mitochondria?

Vitamin C also helps with carnitine synthesis. Interesting: My carnitine levels are low. I guess I need that C.

There was a bunch of other stuff too. It guards against cardiovascular and cerebrovascular(?) disease. The health insurance people will be pleased to know that. Or maybe not. I am sure they wish for my death every month.

So with all that information on-board, I am thinking that my levels need to be higher than "low normal". So despite the humongous supplements I already take, I am thinking I need more.

Now for the sake of comparison: I oversupplement B12 because me levels were low, and I take about 83,000 times the recommend dose of this. My B12 levels are now sky high. AND my idiopathic syrinx is shrinking. Are these two facts related? I don't know. I know there is some anecdotal evidence that B12 deficiency can cause syringomyelia, but (of course) it has not been studied. So yeah, I am taking me B12 daily.

However to achieve the same saturation levels with C as I did with B12 would be a bit difficult. The RDA of C is 75mg per day. So if I was going to do the same thing with C as I  have with B12, I would have to take... about 6 kilos of C per day. That is over thirteen (13) pounds -I mean POUNDS of vitamin C per day.

I have trouble with 6 grams.

Now I am not advocating that myself or anyone take such silly levels of C (silly levels of B12 I am all for) But I am going to continue to research the Vitamin C angle and try and find more information; like maybe some other deficiency is impeding full absorption? 

Because I still want to know where it is all going.

Ten

My darling boy turned ten today.  WTF?  I didn't give him permission to do that! The way I remember the deal, he was supposed to stay little, cute, endearing but very smart for several years. Then he would suddenly be a tall, dark handsome 19yo and leave on a full scholarship to Harvard, having totally bypassed the lanky, awkward and parent-distaining years. That was how I pictured it, anyway. I don;t remember signing up for ten.

He started off well. I remember holding him in the delivery room and just staring at him, utterly fascinated and enamored by this person who had come from my body. I remember him staring back almost as interested, quiet and wise. It felt like there was no-one else in the room. There was some commotion going on as they tried to stop my bleeding, but I really didn't care. We were in a little bubble and to me, Joe was the only person in the room. Himself  came into the bubble a little bit, to visit. But it was our bubble. Himself was a guest.

As we left the delivery room, I looked back and it looked like Freddie Kruger had had a party in there. There was  a sizable pool of blood on the floor and big blood spatters across the wall. I still didn't care.

We lost Joe when he was about 19/20 months old. He lost all his language. He stopped singing. He became guarded and silent, prone to horrible tantrums over the most minor things. We didn't know until a long time later that this was a classic Autistic regression. We had just moved house  and everyone blamed the move. <sigh> we lost a lot of time there.

But the language delay was undeniable. We got a lot of help for him through the system here. First for language, then for other stuff and and he slowly made progress. It took a long time. At 4½, he finally gained functional language. He was mainstreamed last year. Now many people who meet Joe are surprised if they learn he has autism, because he has made such great progress. And he can fake "normal" pretty well a lot of the time.

I used to think Joe was a gift and Autism a curse, but now I cannot distinguish them. I can't imagine Joe as anyone other than who he is, and he is pretty awesome.

Except for being 10 that is. Honest to God! I am too young to have a ten-year old child.

Hands

I have been slowly losing functionality in both hands -particularly the left. The best guess anyone can come up with is that it is Cubital Tunnel Syndrome, which is kind of like Carpal Tunnel Syndrome, except in the elbows, as opposed to the wrists. My fingers on both hands are starting to splay outwards, as the muscles atrophied and tendons have slipped off the bones: First the pinkies, and now the ring fingers. My pinkies turn inwardand get in the way when I try to make a fist or grip anything. However compared to everything else that was going on, it was a minor annoyance, so I kind-of put it on the back burner.

I am supposed to do exercises and PT and all sorts of stuff to retain function in my hands, which I don't often do, because, -let's face it; who thinks to squeeze a ball, when there is so much else one can be doing that one's hands. Like eating popcorn and scratching your arse (with the other hand) while watching TV? Ok I tell a lie there. I never eat popcorn.

I noticed that I was adapting to the situation and not in a good way. I  was starting to leave my pinkies out altogether, tucking them under the wheel when driving, holding them out of the way when using my hands. I no longer use them when typing.

Well as I mentioned before, I have started knitting recently. A lot. I think the knitting action is helping my hands. It is an exercise I will actually do, which is the key to any exercise. I have been noticing some slight  return of function in my right hand, and I am trying to teach myself another style of knitting, which makes more used of the left hand. I think if I can alternate both styles, I may be able to find a way to help my hands.

And of course, while knitting is not considered cool in the circles in which I used to run, I can pretty much guarantee that Joe will be the ONLY kid in the town with a hand-knit Harry Potter-style Scarf in the NY Giants colors. I think that is kind of cool.

Waterlogged

I have not had a chance to post much recently and I apologize. It has been a bit mental here in the past few days.

On Wednesday, I thought the fridge was making a funny noise. I noticed an odd hissing noise a few times as I passed it. Each time I would start to investigate, something would happen; the phone would ring, a kid would need help, the dog might scratch on the door.

Then George The Cat failed to show up for dinner. George loves his food, so I reckoned something was not right. The kids and I started a search: Joe took the upstairs, Grace the main level, and I went down to the basement.

As soon as I opened the door, the heat and steam hit me. And the hissing noise became very loud... Then I noticed the water.  About an inch or more, throughout the entire space...

It turns out that a hot water hose that feeds the washing machine had broken. That was the hissing noise I had thought was coming from the fridge (the basement leak was directly below the fridge). 

I found George on the top of the cat tree, which was an island in the basement lake. He is too vain to get his little paws wet. Not even for food! I eventually got him down, and only one of us got wet (me).

George's little world has been rocked by this event and all that followed.  The basement -his usual escape from kids- has been off-limits,. We have had cleaning crews (two. -long story) in, the plumber, the claims adjuster and  all sorts of activity. 

You know it is so true that all cats are Aspies. Some moreso than others. George doesn't like change one bit. He has been totally out-of sorts the past few days (as has Joe!). Not his usual gregarious self at all. He has even relinquished his self-appointed role as house greeter. I wonder if one of the men accidently trod on him or something? He seems quite wary of men right now -even Himself, who was quite hurt when George refused to come to him when called.

It is sad when trust is broken, even inadvertently. Grace blames the plumber. When Gorge was young a plumber came and freaked him out, and ever since then, she tells people that "George is afraid of plumbers" (Of course, it has never occurred to Grace that he may have been afraid of that particular person, and not plumbers as a group!). She lectured poor Kenny the plumber about this while he was here yesterday. Poor Kenny! He adores animals, so I think his feelings were a bit hurt.

This photo of George was taken by Grace last year. She is quite a good little photographer,  isn't she